All the ways I help myself

It took me a long time to learn how to listen to my body and to give myself what I need. I think it was graduate school that knocked that message into my thick skull. That I HAD to take care of myself before I could take care of anyone else.

Since becoming disabled that lesson has only grown. I had to become a strong advocate for myself and learn how to listen to what's going on with my body. It's the only way I could get help from my doctors. 

Here are a few things I'm into at the moment that make taking care of myself fun and easy.

My monster mug

My 40oz mug from Target. I drink about 3 of these a day. It's lighter than it looks and has saved me more than once when I thought I'd have a quick medical appointment. I only keep water in it and I hand wash. Totally worth it. It's lighter than many of my smaller travel cups. Water water water.

Fidgets

I struggle with dermatillomania. I've had it my whole life. My mom says I use more band aids than anyone she knows. This is more often than not the cause of that. I've been making a real effort lately to tame that beast. This comes in the form of fidgets. I have spinner rings and bought this new zipper bracelet as well. I love it. 

Still disabled!

I'm not a Wonder Woman ALL the time. Some days I'm in more pain than others or I've tweaked a muscle. Then I use my disabled parking plaque. This is an easy way to help myself. Save my spoons and make life a little easier to prioritize my energy.

Joint compression

Another thing I do is make sure I have the right equipment to combat muscle pain and fatigue when I need to. Like the right shoes, braces and medication. These Crocs are amazing. A gift from my mom. But when I'm really out walking my high-top boots are best to secure my newly weak right ankle. I pay attention to my body signals and do my best to help myself. I'm very fortunate to be able to have access to the right tools and tricks. 

 (I was not reimbursed for any of these products. It's my personal opinion only.)

What is a "disability" anyway?

I consider myself to still be disabled. Many people would see me at the gym, or scrubbing down my kitchen counters and disagree. So why do I claim the word "disabled." What does that term mean to me?

To me any disability is something that gets in the way of your baseline functioning. That baseline is different for each person in the world. Only you know what it is. 

People with insomnia are disabled. If your depression makes you late for work, you have a disability. It's not just someone using a piece of durable medical equipment. A wheelchair, cane or walker. It's not someone with a missing limb or using sign language to communicate. And most of the time it's something you can't see. Like Autism or Mitochondrial Disease.

Yup. Still disabled.

I am disabled. I suffer from horrible chronic pain even now. A few times a week it makes sleep challenging for me. I take a slew of medications to try and keep at a level of pain that I can tolerate. I struggle with nerve damage on the side of my face where I had my brain surgery. It hurts when it is even touched. Often it hurts when it's not being touched. The Botox I take for my migraines helps it incredibly. Botox is a huge tool to keep the pain, dizziness, auras, pressure and other issues from my craniotomy at bay. But even so I have "breakthrough symptoms." Especially if the weather changes or I travel to even a slightly different elevation.

My migraine symptoms often make my head very fuzzy. My constant body pain doesn't help either. This impacts my memory. I often forget what I was saying, especially if someone interrupts me. Remembering names is a nightmare. I wish the world wore name tags.

You can't see any of these things. I don't go around screaming or crying when I'm in pain. The metal plates on my skull are on the inside (thank goodness.) I smile and get on with my life. If it gets too bad, I'll go to bed and try to sleep till the extra medication kicks in. I'm working hard to feed my body right, get rest and build muscle. That is a full time job for me right now and I'm unapologetic about it.

So yes I can walk, laugh, use gym equipment and stay awake through the day (most of the time). I am still a disabled woman and likely will be my entire life. My symptoms are just managed (most of the time) with a lot of hard work and great medical care.